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| Jake at 3 1/2 on Amelia Island, Florida December 2009 |
Sitting
quietly in a dimly lit little room, I look through a 2-way mirror once again. Through it, I see a multidimensional
spectrum. Depending on which layer I choose to focus on, that one dimension
comes into focus more clearly. In
the therapy wing of Baptist East Hospital, in Montgomery Alabama, my six-year
old son, Jake is having his weekly half-hour speech therapy session. In this little room, I am able to
overlook his therapy session without needing to be with him, thus not
interfering with the session and not distracting him in any way. Important
learning is taking place for a child that lives with autism. Jake is 1 of every 88 children (and
of those 88, it is 1 in every 54 boys) who cope with the challenges of the
autism spectrum. These are the
most recent statistics from our national Center for Disease Control. We call it a spectrum disorder, because while some kids may
have similar attributes like the social and speech delays, no two children living
with autism are truly alike. But
to us, his parents, Jake is one in a million, period. This is probably true for every parent of a child that lives
with special needs.
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| Dad and son - Jake at 3 1/2 |
Every
week that we go to speech therapy, I hope to see some sort of progress. Whether I want to admit it or not, and
whether or not this is a realistic expectation, this is always in the back of
my head, percolating from inside of my very being. This is the part of my soul that tells me to never give up
hope and to send my positive energy out there with everything that I do for my
son. It is because I am so close
to the situation, (I live inside of the box) that it’s hard for me to see the
small progress that may be taking place from week to week. However, as I distance myself from the
situation, and take in several months’ worth of therapy (I think outside of the
box), I am able to see the large momentum wheel spin forward. Above, I reference my previous post from
1 November 2012: Inside – Outside – On
Top of the Box, (http://lilybrose1948.blogspot.com/2012/11/inside-outside-on-top-of-box.html) where parents of autistic kids “live inside the box” in
order to focus on the task at hand. Simultaneously, they have to “think
outside the box” in order to problem solve daily, landing on top of the
box - succeeding with both, and being able to repeatedly do this, with two feet
in tact.
But doing so is no simple matter.
Reality or Perception
When
I think of a mirror, glass or a window, I think of light. Light is a necessary component to help
us see things more clearly. Light
gives us warmth. Light gives us
answers. If we can see something
in the best light, then we know what it is, what it means, and what it can or can’t
do. When we look at an object that
captures light, like a 2-way mirror, we are able to see it’s reflection, and
what this reflection means to us, is our own perception of that reflection. We are seeing our child struggle, and we
can’t help him figure out the right answers from where we are sitting. In a sense, this mirror acts as a
barrier and protects him from my distracting thoughts, while protecting me from
the intensity of what it is like for him to struggle through a regular speech
therapy session. This holds true for any of the other therapies
that he has as well. Is it that we
don’t want him to struggle at all, wishing that we could telepathically instill
our own previously acquired skills in him? Would we rather be the child who can see his own reflection
clearly, without all these other thoughts running through his head. On the other hand, would we
rather be sitting where we are on the other side, looking at the child who can
see only himself? Looking through
these multidimensional layers leaves us with unanswered questions and a feeling that things are unresolved. Maybe we are trapped inside one of
those dimensions, and in our struggle to make sense of it all,
we end up getting lost inside of its layers. Is this reality or perception?
Ironically,
the child having the session is not distracted by the mirror or by his own
reflection in any way. It is the
parent on the other side, who can feel distracted by what she experiences from
her side - her own perception.
It is the observer that takes in a lot of information and struggles to
process what she sees, versus how it makes her feel about what she is seeing. My son, who views the mirror’s side, sees
himself in its reflection and typically ignores the mirror. It is of no importance to him. He may, on occasion, catch his own
reflection in passing, smile knowingly, and move on with his task. He sees things as black and white in a
way. He is good at concrete
thinking but abstract thoughts will not come to him naturally. The puzzles on the sides above are some of the puzzles that Jake has worked on during speech therapy sessions.
Your own reflection
One
of the viewer’s challenges of looking through a 2-way mirror is that while she
stands on the window side, one other hidden dimension occasionally sneaks into
focus. This is her own reflection
staring back at her. The viewer
from the window side can see through the mirror-window barrier and into the
other side, simultaneously catching a light glimpse of her own
reflection. The psychological
translation of this event may be that we see a part of ourselves in our
children. We may remember what it
felt like to struggle with something in our past, and want to save our child the pain of going through his own learning mistakes. What I’ve learned through my own experience
with autism, is that there are no learning mistakes. Making mistakes is
a part of learning, so trying to prevent mistakes from happening, is really,
interfering with the learning process that is taking place.
How
does it make you feel when you see your own reflection, when you don’t expect to
see it, like when you walk by a building with reflective glass and catch a
glimpse of your own reflection?
Does it catch you off guard and leave you feeling vulnerable?
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| Jake at age 6 - fine motor skills/occupational therapy session |
Jake’s
speech and occupational therapy sessions are scheduled back to back on Thursday
afternoons, which is when I typically hit my low energy point of the week. I observe his speech discreetly, but
wait in the sitting area during his occupational therapy, and occasionally come
in to observe a session. The
occupational therapy is set up differently than the speech therapy. Occupational therapist and
child work in several areas including a gym with various stations, as well as a
classroom type of therapy room, which doesn’t have the 2-way mirror. At that late point of the week, I am
usually struggling to make it to the end of the day, coffee or no coffee. Seeing a tired reflection staring back
at me, is sometimes a startling realization of how living with autism affects us
parents, and how exhausted we are most of the time. I almost feel maternal towards the image that glances back
at me, as if I am not even looking at myself, but glancing back at a tired
child who needs to be put down for a nap. By putting all of myself into family life with autism, I
sometimes feel like I am losing myself in the process, and that can be a scary
thought. It is this particular
thought, that is a constant reminder that I need to find my balance. I need to
reach that “Zen” state of mind, where only the things that I prioritize matter
(living inside of the box).
Seeing
your own reflection without being ready for it makes you see things as they
really are. It is your own personal truth, in the raw. You question if it is really you
looking back, and wonder if the way that you see yourself, is the way that others
also see you. Can others
notice how exhausted I am behind my friendly smile?
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| At a local pumpkin patch farm, October 2012 - every outing is a teaching opportunity. |
Pealing back the layers
After
sixteen months of coming here, I realize that this 2-way mirror has given me
more than just the 2 obvious views.
I think about the emotions that I typically experience while observing
my son going through his therapy sessions. I wish that I could reach through, pierce the window-mirror
barrier and help him through his difficulties, fully knowing that I cannot
help him in this way. He will have
to get there on his own timeline, when he is ready and has acquired the skills he
needs to get there.
I also watch all the little successes that he has and quietly cheer him on from the other side, occasionally blurting out a happy giggle or a cheer. The most difficult thing to watch is his struggle with the new things, and the little noises that he makes in frustration or in an attempt to escape the new activity. The speech therapist teaches him through different games and activities such as puzzles, stacking toys, reading books and matching games. Teaching through games enables a two-way interaction, and proper game playing with taking turns, which is critical in triggering speech and promoting a natural social interaction (something of which kids with autism have a deficit).
I also watch all the little successes that he has and quietly cheer him on from the other side, occasionally blurting out a happy giggle or a cheer. The most difficult thing to watch is his struggle with the new things, and the little noises that he makes in frustration or in an attempt to escape the new activity. The speech therapist teaches him through different games and activities such as puzzles, stacking toys, reading books and matching games. Teaching through games enables a two-way interaction, and proper game playing with taking turns, which is critical in triggering speech and promoting a natural social interaction (something of which kids with autism have a deficit).
A spectrum of dimensions
Looking
through the 2-dimensions of the mirror can also produce a kaleidoscope
effect of other dimensions that shift and reflect into our life with
autism. Three such dimensions keep
presenting themselves to my mind’s eye: the past, the future and the
present. I purposely state them in
this order, with the present tense being the last, because the present tense is
the most important one. It is the only one over which we have any
sort of control.
The
Past
The
past is where we noticed symptoms of autism, long before we knew what autism
was. The past presented all the
unknowns, and didn’t prepare us for what was about to come. The past is also
where we received the autism diagnosis and got started on our life-long family
journey.
The
Future
The
future is where we place all of our hopes and dreams for our son. It is with hopeful hearts that we keep
moving forward, progressing in our journey to support Jake's development. Carrying forth our mission of fulfilling our goal for him to become independent, having a
meaningful and fulfilling life.
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| Holiday lights on Amelia Island Florida, Thanksgiving 2012. Lights give us a feeling of well-being and give us hope. |
The
Present
Lastly,
the present is the one over which we really have any type of control. While going on this family journey, we
keep the past in our mind, because this is where it all began. This is where
we started. We look onto the
future with hope, because we know that we are doing all the right things for
him right now. It is only with hope that we can get through this life-long journey. But it is in the present where we must
live. It is in the daily tasks that maximize the learning that takes
place. These are some of the
things that we are able to even control in any way. It is something that I try to remind myself, even as I
advocate for Jake and work on raising autism awareness, so that he and other
children living with autism, can have a good future – a future where they are
accepted and appreciated. I remind
myself that even though Alex and I do what we can to secure a good future for
our son, that we must live in the present, with all of it’s ups and downs and
learning challenges, because without doing so, we would not maximize his
potential to have that future that we dream about. Living in the present means embracing it all with open arms
and accepting him exactly as he is right now.
As
I look to the past to that first week after we received Jake’s new autism
diagnosis back in the summer of 2009, and then looked up to the universe and
said “bring it on, ” we will persevere into the future, while embracing every
present step of the journey, with our heads lifted high, and our hearts filled with
a seamless kaleidoscope of light, hope and love.
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| An evening stroll through our neighborhood in Montgomery - a path leads to the light of a beautiful sunset. |
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Creationlily
Emily, Thanks for your message. I sent you a g-mail the other day - I'm not sure if you've seen it yet?
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